Time travel, both backward and forward, continues to be a favorite theme in popular culture. If we could travel back just 60 years or so, we would see a vastly different health care system, one geared to provide acute care, not chronic care, and one offering what today would be seen as rudimentary treatments. No one in 2012 would expect a surgeon to use techniques from that era or a doctor to prescribe medications long surpassed by more effective drugs. Yet one important area of health care and long-term care services and supports clings to outmoded terms and measures.
Welcome to the hidden world of family caregivers — broadly defined as the spouses, adult children, other family members, partners, friends and neighbors who provide or manage most of the care of the growing number of noninstitutionalized people with chronic illnesses and disabilities. As our recently released AARP Public Policy Institute and United Hospital Fund report (available here and here) puts it:
Family caregivers have traditionally provided assistance with bathing, dressing, eating, and household tasks such as shopping and managing finances. While these remain critically important to the well-being of care recipients, the role of family caregivers has dramatically expanded to include performing medical/nursing tasks of the kind and complexity once provided only in hospitals.
These tasks include managing multiple medications, not just pills but injections and infusions; wound care; operating medical equipment like feeding tubes, dialysis machines, and mechanical ventilators; and using electronic monitors and other devices.
Outmoded Measures Of Family Caregiving
Since the 1960s family caregiving has typically been defined in terms of providing assistance with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs). These terms were not intended to describe family caregiving. Rather, they were designed originally to measure progress in elderly people undergoing rehabilitation for hip fracture. Later other diagnoses were added.
In the 1980s researchers and policymakers started using the measures to determine whether a person needed help at home and how much might be provided by private or public insurance. Then, as now, family members were the default providers; what patient needs, family will do. And despite the vast changes in an aging, chronically ill population, and a vastly more complex health care system, professionals have not re-examined the assumptions on which these measures were based or whether they still capture what older people need and what family caregivers actually do.
Until now. Our report, “Home Alone: Family Caregivers Providing Complex Chronic Care,” is the first national population-based survey of family caregivers to ask about what we call medical/nursing tasks—what family caregivers do, what they find hard about the tasks, who trained them, and the impact on their quality of life. The online survey of 1,677 respondents — all of whom had provided either ADL, IADL, medical/nursing tasks, or some combination — found that 46 percent had provided medical/nursing tasks to a person with multiple chronic conditions. These family members were in and out of hospitals and emergency departments, but the encounters with the acute care system did not result in training or preparation for what had to be done at home.
Two tasks — managing medications and wound care — were analyzed in depth because they were among the most commonly reported tasks and because errors or adverse events have serious implications for patient outcomes and health care utilization. Family caregivers were doing these tasks largely on their own; 69 percent of the care recipients had no home visit by a health care professional. And they also learned how to do these tasks without much professional help; 61 percent of those doing medication management said, “I learned on my own.” What is more, they, not doctors, nurses, or care managers, were also the care coordinators.
These are daunting challenges. No wonder caregivers expressed anxiety, fear, depression, and isolation, even as many realized that they were helping to keep their family member out of a nursing home.
The time is right for a fresh discussion of what needs to be put in place to ensure that family caregivers get the information, training, and support they need to do these tasks, or help finding alternatives if the situation cannot be sustained.
Our first recommendation — and the one that will be critical to implementing all the others — is to encourage a consensus-building body like the Institute of Medicine to review the currently used measures (even ADLs and IADLs need some updating) and to develop a measure that captures the medical/nursing tasks that are increasingly expected of family caregivers.
The report presents a series of recommendations that urge individual health care providers, their facilities and agencies, and professional organizations to work more effectively with family caregivers. Individual professionals cannot do this alone, yet without their personal commitment to ensuring that family caregivers are well-trained and supported, formal guidelines and protocols will not make a difference.
Educators in medicine, nursing, social work, and allied health professionals should review their curricula to strengthen their attention to family caregivers. Much more needs to be done to determine how best to train family caregivers, who have different levels of health care literacy, different learning styles, and different technical abilities. Professionals need to understand that the family caregiver is doing a difficult, possibly painful or embarrassing task for the first time on a person with whom they have an intimate relationship, not another student or a healthy volunteer.
As federal and state governments develop new models of care that stress patient-centered care and coordination, as well as cost containment, they need to explicitly include attention to family caregivers’ needs in these models. It is not enough to say “patient/family”– each needs individual attention.
The time traveler who looks back at this era from the future will, we hope, consider our health care system not just quaint but unsupportable. In that future era, family caregivers will be partners with health care teams; their strengths and unique perspectives, as well as their limitations, will be recognized and integrated into a truly person- and family-centered system of care.